Needed: A guide for the perplexed ADHD parent

October 21, 2010

As another new school year gets underway, most of us parents are distracted enough, as we juggle carpools, shopping, housework and homework; deter sibling mayhem; and – oh, right, for most of us – report to our jobs.

But just imagine that you’re the parent of a child with attention-deficit hyperactivity disorder (ADHD). For all too many families, this can mean such a surfeit of distractions that life slides into painful chaos.

The Centers for Disease Control counts 4.5 million U.S. children diagnosed with ADHD, with its chief symptoms of forgetfulness and impulsivity. This suggests that there are many more millions of parents flailing, and, too often, failing, to help them. Despite constant claims that ADHD is overdiagnosed, which it may well be in some circles, the more serious problem is that so many kids who would benefit from help never get it. The surgeon general has estimated that only about 20-25 percent of children with any mental health problems receive adequate treatment.

When it comes to ADHD, the costs of failure are huge, including a heightened risk of school failure, drug and alcohol abuse, and jail time, and an estimated $30 billion annually in beyond-the-norm medical expenses. For the sake of our tax burden, then, as well as because it’s the right thing to do, society should be supporting parents of children with this disorder, instead of blaming them, as is now the default mode.

To get started, let’s take a closer look at ADHD families’ trifecta of challenges.

First: Because clinical-grade distraction is so often hereditary – more than schizophrenia, and just less than height – the disorder can be a double-whammy. In other words, many parents of kids with ADHD are also seriously distracted, having trouble finding their keys, much less maintaining the daily “reward charts” recommended by their child’s latest therapist.

Second: Despite all that scientists now know about the biology of ADHD, including a new report in the medical journal Lancet, with yet more evidence about the disorder’s genetic basis, many influential media commentators continue to insist that the disorder isn’t “real,” but rather the result of bad parenting or just bad kids.

Third: Families in despair about how to cope with a child’s snowballing failures at school and at home have helped engender a booming market in costly, risky and often unregulated treatments – let’s call it the ADHD Industrial Complex. This business behemoth includes not only the $290 billion U.S. pharmaceutical industry, with its lavish ads for stimulants, such as Ritalin and Adderall – effective under some circumstances but by no means a cure-all — but also a host of alternative treatments, including special diets, herbal supplements, computer-based programs, boarding schools and “dolphin-assisted therapy.” Overwhelmed parents are especially easy prey for charlatans who waste their time and money.

Once we finally acknowledge all that families coping with ADHD are up against, perhaps we can start effectively supporting them, and saving everyone money and anguish in the process. The easiest, cheapest and most immediate way to start helping is to make sure that high-quality information on effective interventions is available.

The good news is that the American Academy of Pediatrics recently took a small step in this direction. Earlier this year, it published an unprecedented chart rating evidence-based treatments for 10 common childhood mental health complaints, including ADHD. The chart was based on research by a for-profit firm, and it ranks treatments including medication and behavior therapy, biofeedback and working memory training according to their support from peer-reviewed publications. (Notably, cheap and easy physical exercise is listed as having “good” support, something few parents ever learn.)

Again, it’s a small step. The chart is published in a medical journal and is filled with obscurities for the uninitiated, including treatments labeled “self-verbalization” and “contingency management.”

In the long run, considering the social costs of ADHD, you’d think it would behoove policymakers and insurance companies to help train pediatricians, the most common first-responders, and give them time and resources for effective follow-up. But in the short-run, given that the federal government has spent more than $400 million on ADHD research in the past four years alone, just how much would it take for one federally sponsored analyst to prepare and regularly update a chart in plain English, available free and online for parents, listing potential interventions by weight of scientific corroboration?

Comments

I cannot locate the chart you speak of on the Journal’s web-page … Do you happen to know where I should look?

Thanks!

M1000

i’m an adult that’s been diagnosed with ADHD and i have suffered greatly b/c of it. as the article says, even conscious, well read people think it’s a hoax.
it also is very depressing.

Kathy

A place called Minds In Motion here in Louisville,Ky is making major head way .My son was in there summer session and we saw major improvement without drugs.
It is all explained on there website . http://www.mimlearning.com/
There must be places like this in other states. I highly recommend going to one of there open houses.

Lisarc

my son has ADD and is struggling in school this year. I’ve been looking for info and its all so confusing.

http://www.facebook.com/profile.php?id=1381477104 Karin Ellzey

While I appreciate your article, we need to move the discussion away from the medical realm that seeks to “heal” with medication before they analyze contributing factors or medical implications. I say this as a parent of a highly functioning ADD child. After much research I came upon the idea that many ADD/ ADHD children may simply “suffer” from a delay in frontal lobe development, delaying their adulthood somewhere into their mid 20s or early 30s.
I found in the course of my daughters development that the educational system could not handle special ed for highly functioning children and put that responsibility onto the parents or more likely, the children themselves. The more functioning the student, the less the system allows for special ed accommodations. SO the child is either not allowed to have disabilities, or the child simply sinks into the boredom of special education where there learning plan crawls at a snails pace, or the child’s self esteem is smashed, or the child’s boredom breeds bad behavior.
Bad parenting may be a factor for some not getting the help that they need, but in my opinion, parental permissiveness destroys bonds between parent and child, while society and the educational system fight tooth and nail against a strong parent that gives firm (not disciplinary) boundaries and non-reward based learning incentives. I saw many parents give up trying to fight the system, or smolder in parental frustration because the help they needed simply wasn’t there.
Add/ ADHD may well be over diagnosed these days, but one may want to consider the systemic dysfunction of the educational system, family values and even the justice system before they commit to medical solutions.

Gilson

Both my son and daughter were diagnosed with learning disabilities including ADD and then I was finally, after much searching, also diagnosed with ADD. It was difficult to help their teachers understand that I saw my job as loving my children and giving them a safe and healthy home; I saw the teachers job as teaching my children. I could afford to get tutors so that my children did not have the double whammy of trying to perform for the teacher and for Mom with their learning. I’m now a grandmother who is very proud my son and daughter who graduated, with struggles, from college and are employed and great parents themselves.

http://www.facebook.com/profile.php?id=763268346 Janessa Hall

Please post a link to the chart mentioned, or at least a way to access the information. Thanks!

Mamahill

While the topic is a good one. This article is like a political speech… alot of discussion without any real information.

http://www.facebook.com/krysta.g.rand Krysta Gordon Rand

My son had a 12 hour psych eval with a battery of tests specific for the diagnosis of AD/HD. He was found to have ADD or the inattentive form. Fortunately, he adapted well to Adderall, the first psychotropic the psychiatrist recommended. He is now an A student, in the GATE program, and “a joy to have in class”. For all the naysayers who “don’t want to medicate their kid” use my son as an example to be open-minded. Sometimes it is a matter of getting the right combo of psychotherapy and psychotropics or behavioral or ?. At worse, is the parent who says s/he is “just hyper” or “all boy”. You are doing your child a disservice. Check the literature in a scholarly journal. These kids have poor outcomes as teens and adults without intervention.

Lberg1964

My son was diagnosed at age 5 and is now a successful middle schooler. His kindergarten teacher refused to consider that ADHD might be the issue, suggesting irresponsible parenting as the problem. I was lucky to have a pediatrition who listened and helped. Had I not had that kind of support I do not think my son would be as successful as he is today. Medication may not be answer for everyone, but in our case we are so much better because of it. Teachers needed to be educated in this area as well as members of the medical community. One friend who also has a child with ADHD was told by a teacher that kids that have ADHD are the product of parents who “smoked too much pot”. While my son has had a great many wonderful caring teachers the ignorance of some is astounding.

EVFKirkpatrick

As the parent of a child with ADHD, I don’t know what I would do if I knew my child’s teacher felt we, as parents, smoked too much pot! The gall is just unspeakable. It’s not as if we have enough guilt and grief to get through the day without these kinds of gratuitious comments.

EVFKirkpatrick

While the medical community may not know the reason for the increase in ADHD, I believe there may be some clues to finding the answer:
1. Parent(s) who have ADHD but were never diagnosed. When I was growing up in the late 1960s, ADHD was virtually unheard of. Sure there were kids who couldn’t sit down, but once recess came, all was good again (usually).
2. The advent of computers, electronic games, and children’s television. Too much time spent sitting and vegetating. We didn’t have these in the 1960′s because we were outside playing, getting rid of excess energy, and interacting with our peers.
3. Drastically cutting physical education and art classes due to budget deficits. Our kids NEED to exercise every day — not once a week. There is no outlet for their energy or creativity. They can’t spend their entire educational lives learning about history, math, and science without the cultural and social influences that define us as human beings.
As a nation, we have become so far removed from what our children need that we give in to all their desires and wants. Our kids need to be exposed to the outdoors, have daily exercise and art classes, be allowed small group instruction for difficult subjects, and be allowed to socialize with their peers as kids — not small adults getting ready for college in elementary school.

Leuckit

I knew in the second grade that something was “wrong” with me. I just had to wait around until they gave it a name. I do not have the hyper disorder. Just the attention deficit disorder.Being a very active child did not make a difference for me. I have three children. All three are attention deficit. When I was young I did everything I could so that nobody would know I was different. And when I had my children I watched them carefully to see if they showed the signs. The school did not want to believe me because my kids were not “trouble makers.” One teacher actually said “when I look at your daughter it is like there is nothing there. Her eyes are just blank.”
I take medication daily for my attention deficit. It makes me feel like I am the person I am supposed to be. I did not give medication to my children until they were older. I am very thankful for the medication. I am able to focus now and I feel I have better control of my life.

Leuckit

If you don’t know what ADD is like go back and pay attention to what Patrick Lucas posted ! That is exactly what it is like. And if you don’t get it then you know what it feels like.
And those who think that lazy mothers with t.v. addicted kids are the problem THINK AGAIN! I posted earlier that i knew I was ADD when I was in second grade. There just wasn’t a name for it. I didn’t eat lots of sugar, I was the youngest of eight children so I got lots of exercise, and I was born in 1962 and didn’t go to a restaurant until I was about 7. My mother grew up on a farm and canned a lot of our food. So, it wasn’t my diet. It wasn’t my lack of exercise and it wasn’t because I sat in front of a t.v.. When my children were young I was a stay at home mother. My kids never had a babysitter. I did everything with them. They were my life and my main focus. We explored we created we imagined and we all are ADD. The meds we take react differently for us than they do for people without ADD. Is that so hard to understand? I am not drugging my children. But, if they couldn’t see the chalkboard I would get them glasses!

Carolbobc

Amen to Mamahill. I am the grandparent of a child that possibly has ADHD. I read this article for information and found none

Barbara Alvarado

I am a grandmother raising a nine year old grandson. I had a brain mapping (QEG) performed on him. I had suspected ADHD, but the results showed sensory processing disorder. We are using biofeedback to calm certain areas of the brain and stimulate others. Has any one seen results from this therapy? The psychologist stated that the typical ADHD meds would not help him. If we ever decide to try some medication, this test will be used to determine more accurately which ones may help. So far I am going the non-medication route. There are several books on Sensory processing disorder, very enlightening. They have given me a deeper compassion and a greater acceptance for him , just the way he is. He is accutely aware of when he is not beeing accepted, and I of all people must lavish that acceptance on him. He is an amazing kid and I am so blessed to ahve the priveledge of beeing on the journey with him.

Terry

I too, searched on the American Academy of Pediatrics site for this supposed chart, but came up empty for the chart or any articles about this. All the words spent talking about the difficult reading of the journal article could have been saved with a link to it. Very poor journalism, indeed.

Huny

Another main problem is that other problems can overlap within AD/HD. All four of my children, and both parents are diagnosed AD/HD. Two girls and mom are inattentive type, two boys and dad are combined type. The boys also have Autism links, such as PDD or Asperger’s. Also one boy and one girl have Sensory Perception Dysfunction (Hyperactive Senses) and one girl has SPD (Hypoactive Senses). One girl also fits in with ODD (Oppositional Defiance Disorder). When you have that many diagnoses and that many overlapping symptoms, it is hard to pinpoint what would work in any situation. I do know that Concerta has helped three of them (the younger I feel is too young yet) and they all went from failing to High Honor Roll this semester. Since the girls were older and had inattentive type, they were undiagnosed until 5th and 3rd grade, where the boys were diagnosed in Kindergarten and Preschool. I knew something was different since the day they were born but had to take my own journey of discovery.

Rsalucci

My son was diagnosed with ADHD at four. We have tried everything to give him whatever help we could find. We worked with our school district and set up an IEP. That had some effect, but the best help came when we heard of a NASA originated computer program that helped military pilots increase their concentration. Using computer games with biofeedback, sounded like it offered promise. It did. We found NASA licensed a company named SMARTBRAIN GAMES Technologies. After two years of using the system my son improved some 80%. He started high school this year and so far is holding a 90 average in mainstream classes. The combination of a school district that is involved and this wonderful technology has given us confidence that my son will live a normal, successful life.

http://tru-health.blogspot.com/ truhealthblog

>>many influential media commentators continue to insist that the disorder isn’t “real,” but rather the result of bad parenting or just bad kids.< <

That's very disingenuous. And inflammatory. There is no such thing as ADHD, that's true. There are attention problems, and there are many underlying reasons. I challenge you to find anyone who claims 'ADHD' is about "bad kids". Please. Ridiculous.

This post is about adults, but I'll post it here, because the principle is similar http://bit.ly/cmjuWe

Nanny

I was told all my grandson needed was structure and discipline. I am the mother of 7 grown children and kept children all my life. He is the first child that displayed the symptoms of distraction and impulsive reactions. The medicine calms and helps him focus, it sends “normal” brains into the wired zone. I know of a mother who tried it before giving it to her child, she was a nervous wreck, he was cool, calm, and collected. You are wrong.

http://tru-health.blogspot.com/ truhealthblog

I am wrong about what?

First, I don’t know why your grandson was the way he is.

Saying he needed structure and discipline was obviously not helpful. The fact that these interventions failed doesn’t mean he had ADHD. He had attention problems.

Stimulants help EVERYONE focus. Your grandson was helped by this. Assuming all other explanations were ruled out (sleep apnea, bad situation at home, being bullied at school, for example), and other interventions were tried and failed (a lot more time to exercise, run around, help with studies, help with any problems in the home environment), THEN stimulants are a reasonable treatment.

I did not say stimulants should not be given. I said there is no such thing as ADHD. It’s just a fancy way of saying “attention problems”. When you say “ADHD” you (or the doctor) don’t have to look for all the possible underlying causes, and don’t treat all the medical, environmental, psychological and social problems that can lead to poor attention.

Kathyellison

For those who’ve asked for the chart about interventions, I’ve posted it on the Facebook page for Buzz: A Year of Paying Attention. All best, Katherine

Kathyellison

For those who’ve asked for the chart about interventions, I’ve posted it on the Facebook page for Buzz: A Year of Paying Attention. All best, Katherine

Gina Pera

It is beyond ridiculous to blame the government and its bureaucrats for lack of ADHD awareness in the general public. The research grants have been made, the papers published, the citations made, etc. At some point, people must take responsibility for their own health, but of course it’s easier when you can rely on a media with a stake in accurate reporting instead of “gotcha” games with “Big Pharma.”

From my vantage point of 10 years in the ADHD advocacy trenches (much of it spent trying to convince reporters and editors that ADHD is real), it is the “media” itself that has been the most luddite, the most pathologically skeptical, and, to put it bluntly. the most stupid about reporting on the facts of ADHD. They have repeatedly shown their lack of science education, not to mention compassion for real people with real challenges, especially in its fawning pieces about the “Gifts” of ADHD (with these man-bites-dog angles often planted by high-powered PR firms representing private interests, NOT pharma).

Most ignorant among the media have been those reporters and editors who resist their own acknowledgement of ADHD and, in a not uncommon inherent ADHD-related tendency to deny and minimize their symptoms, and have taken the coward’s way out by promulgating the “Gifters” message — that ADHD is a gift and that Big Pharma is out to medicate away your gifts. Your children’s, too!

Check out one “Pulitzer-prize winning” journalist’s effort in Our Daily Meds. The author should not be allowed to call herself a journalist but instead, to be more accurate, a self-promotional, grasping opportunist. What a shameful display.

Let’s just be honest here. If the media had been doing its job for the last 10 years, we wouldn’t have so many myths and misinformation passing for “alternative” remedies. People wouldn’t be entertaining “dolphin therapy” and they would have the facts on “alternatives” such as neurofeedback.

They’d also know that ADHD is considered the most highly impairing outpatient psychiatric condition but that it also considered one of the most treatable. They’d also know that ADHD’s pharmacotherapy is not simple and that it is often necessary to persevere when side effects, such as insomnia, appear. Because there are always workarounds. Instead, they love to talk about the side effects and misinterpret studies to suit their cognitive dissonance, jumping with glee at the chance to showcase rogue researchers.

Experts and people who have been in the trenches for years know these ins and outs. It’s the journalists who are always a day late and a dollar short — but usually seeking to capitalize on the confusion when they do arrive on the scene.

Of course there have been exceptions. Judith Warner is a stellar example of journalists who are truthful, rigorous in their research methods, and compassionate, willing to put the sensationalism aside in search of larger societal goals. Read her book “We’ve Got Issues” and her New York Times blog posts for examples of what ethical journalists should be doing.

Guess what? Without these ads — which don’t seem lavish to me, especially not compared to the parade of antacids, libido-enhancers, sinus remedies, etc. on any given hour of commercial TV– many people would not know what ADHD is, much less that there is a treatment for it.

They don’t hear about it from the media. Most GPs say they don’t feel confident in screening for or diagnosing/treating ADHD. Psychiatrists might or might not know about ADHD, sometimes preferring any from a smorgasbord of other specialties to the blatant blindness towards others. Same with therapists.

By casting aspersions on these pharma ads, Ms. Ellison is just using the same tired old brush to create suspicion about ADHD and its evidence-based treatment. That she does this while scolding the government. which has stepped up to the plate, is just nothing short of disingenuous.

Check out the National Resource Center on ADHD, a program of CHADD (the national non-profit devoted to ADHD) and the U.S. Centers for Disease Control:http://help4adhd.org

Gina Pera

Huny,

Your family is a great example of how widely varying the syndrome called ADHD can be, even within one family.

As for those other diagnoses, I would urge you to learn more about the neurobiological common linkages between them and ADHD. Sometimes parents get even more confused by consulting educational specialists or other types of professionals such as audiologists or occupational therapists.

The fact is, there is no evidence of, for example, CAPD (Central Auditory Processing Disorder) as separate from untreated ADHD. In other words. CAPD is often treatable along with other ADHD symptoms.

good luck,
Gina

Gina Pera

Barbara,

Please see my response to Huny above.

And please do not rely solely on this psychologist’s opinion. Unfortunately, having a Phd does not always make a psychologist well-studied in ADHD symptoms and treatments.

In fact, the stimulant medication often DOES have a positive impact on so-called sensory-processing disorder (which is so common with ADHD as to be practically a core symptom).

You might be accepting of him just the way he is, and that’s wonderful. But please consider that this acceptance might be cutting him short in life. Sensory processing difficulties can haunt a person in many ways throughout life. Same as with the hearing impairments that often accompany ADHD.

It’s one thing to accept a person’s (or one’s own) deficits if they cannot be addressed. To fail to address them, though. that’s quite another matter.

http://pulse.yahoo.com/_6VK3AIWNRK5NYODI6VNLAJDPEM A M

I fail to see any genetic connection – however, behaviors are learned and this article says: “many parents of kids with ADHD are also seriously distracted, having trouble finding their keys, much less maintaining the daily “reward charts” recommended by their child’s latest therapist” – change your behavior and you will change your child’s behavior.

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